Saturday, January 5, 2013

Starting This Story at “The End”


Genealogy is one of those backwards pursuits where you start from the end, and work your way back to the beginning. Since I’m starting a new project today, that is exactly what I’ll be doing: telling you about the end of one family’s story.

I’ve mentioned a little about this family before: some of the photos I’ve struggled to identify, some of the eccentric extended family members I’ve met, some of the people I’ve had to bid a premature goodbye.

Today, I want to focus on the one person in this family I knew the best. From there, in future posts, I’ll acquaint you with his immediate family members and the interesting features of their brief lives. Eventually, I’ll round out the story with the smattering of discoveries I’ve made about the family’s previous generations here in California, and lead you to the spot where the trail goes cold: just before the 1849 California gold rush, when trails led backwards—both in tracks across the Plains, and in the wake of a steamer traveling around the Horn.

This is the story of the Bean family which arrived in San Francisco Bay from Maine, and the story of the Shields family which steadily made their way westward from New York and Illinois. And it’s the story of all the family lines which intertwined with these two families throughout the time they spent making their way to their Pacific-bound destination.

Gregory Earl Bean
“The End” is marked by one young man by the name of Gregory Earl Bean.

Born in the family’s Bay Area hometown of Alameda, raised in beautiful Santa Rosa, he was a talented musician with high hopes as he ventured to the Conservatory at University of the Pacific to pursue his dream of operatic voice performance.

Greg was also a soul plagued with an uneasy destiny: genetically bestowed with a syndrome affecting both his appearance and his health, he had no guarantee of tomorrow. If he chose to play the hand he was dealt, he had to play it now.

The impact of Marfan Syndrome on Greg’s height was readily apparent from a very early age.

Greg Bean 1952 Santa Rosa California marfan syndromeSee that photo of the young tyke sitting by the birthday cake? Take a close look and count the candles on that cake.

That’s right: one. This big guy is now one.

He’s off to a rollicking start.

By the time Greg was nearing junior high school, basketball coaches were drooling over him. Never mind that he had “trick” knees. All he had to do was stand there. No jumping required, it seemed.

While the height seemed a positive, there were detrimental effects of this syndrome, too. Mostly, they were internal—invisible to those who didn’t know. But reminders like the loss of many of the males of the family’s preceding generation served as a somber testimony that this disease meant business.

And yet, those school pictures kept churning out images of what looked like a usual student portrait.

Gregory Bean Santa Rosa California Marfan Syndrome

The introduction of Marfan Syndrome into my pursuit of genealogy highlighted the need to trace health records back through the generations, also. Some health tendencies are definitely genetically linked, and Marfan Syndrome is no exception. I learned where the trait was introduced into the Bean family. Though I have yet to trace the family tree data for this auxiliary line, I have met some of those extended family members—some of whom have the syndrome but were not as severely impacted by its presence, and some of whom I’ve never been able to meet, but whose stories I know, regardless of our inability to connect.

Sometimes, when families are so small—perhaps especially so when the number of members is limited by reason of disease—there may even be more of a closeness between those who otherwise might be considered distant relatives. Because of Marfan Syndrome, Greg never really knew his dad—let alone his uncle or grandfather. A grand-uncle and grand-aunt stood in as surrogate grandparents. Another distant aunt—actually the wife of another deceased family member—became a most adored relative. In one of my favorite pictures of Greg, he is visiting this very aunt. Somehow, thinking back on that picture, I realize that it was this aunt’s husband whose family was the one to introduce the gene—and thus, ultimately, the disease—into Greg’s family.

How was anyone to know, at the time?

Besides, do we ever make heart decisions, based on the cold statistics of medical reports?

We love, regardless of “incidentals” like that—even if those “incidentals” end up costing loved ones their lives.

And really: if it weren’t for that love, all we’d have left is a life.

In this case, a very short one.

Gregory Bean Marfan Syndrome

16 comments:

  1. Wow Jacqi, you write so beautifully. I look forward to reading more about Greg and his family line.

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    1. Andrea, I'm honored to have you join me. I appreciate the work you are doing on your own blog, too. Please feel free to continue to join the conversation here! I'd love that.

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  2. Such a sad story. One of the many things that family history has done for me is to help me see that hard things have always been a part of life. It's inspiring to see the many heroes in our history--those that faced tragedy and trials head on and made the best of what life they had. It gives me the courage to face the trials I've been given.

    You do write beautiful Jacqi. Thanks for all that you share.

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    1. Thank you so much, Michelle. Good point, though hard-earned wisdom. I know you and I have discussed this most recent season's difficulties. Sometimes, life can seem so hard. It's much better to don the viewpoint you've adapted--to see the positive of the heroic endurance exhibited by these good examples in our own families.

      In this world where everyone seems to prefer the myth of the "Nice" life, not much is mentioned about the "hard things" that you spoke of. But they are definitely there. Everyone has his or her own way of dealing with those painful seasons. I tend to think the approach you favor is one of the more beneficial.

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  3. I'm looking forward to following this family. It is nice to start at the beginning (or end). Whatever. :-)

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    1. Thanks, Grant. I appreciate having you join in. You know how it is with genealogy, though. I guess you can say this will be a never-"beginning" story!

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  4. Your love for this family shows..he was ever so handsome. I am here for the journey:)

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    1. Glad to have you along, Far Side. And, of course, eager for any of your expert input where it applies! :D

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  5. I'm with Far Side... he's a good looking dude - it's a shame Marfan took him at an early age.

    Wasn't this the condition Hermann Munster (Fred Gwynn) had?

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    1. Well, that question took a little searching, Iggy, but it seems Fred Gwynne had pancreatic cancer.

      I've read that some people suspect that President Abraham Lincoln had Marfan syndrome, based on analysis of some of his photographs, where his hands seemed to be blurry. Because Marfan syndrome affects the connective tissue, among other more serious difficulties, one possible symptom is noticeable shaking of the hands.

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    2. Sorry to send you on the wild goose chase. Perhaps I was thinking of Lerch (Ted Cassidy) from the Addams Family. Never know why my thought train goes where it goes -

      Euell Gibbons, a natural food advocate and author who gained fame on television as the pitchman for Grape Nuts cereal had the condition as did Vincent Schiavelli the gifted actor.

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    3. I'm not sure about Ted Cassidy, Iggy, but you are right about Euell Gibbons and Vincent Schiavelli.

      You inspired me to check a few others out, too...actually, to write another post on this, as it's too much to say right here in a comment box. I'll post some more Wednesday on the topic of Marfan's.

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  6. This was a great blog post. I read all the following ones, too, on Marfan Syndrome. Not many people are blogging about their "medical genealogy". I wrote once about the diabetes in my family, but it was too sad to keep writing more. Lots of little ones died of diabetes in generations past, and now it is so treatable but it does lead to complications later in life even nowadays. There was a young man in our neighborhood who worked as a greeter at Walmart, and he had Marfan. His last year before he died he met everyone at the door in a wheelchair. It was quite heartbreaking to know he was so ill and still so young.

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    1. It is so sad to know of those young people with such serious health limitations, Heather. Actually, the young man you knew with Marfan's seemed to have quite a different experience than the ones I knew about--I'm even aware of situations in which people accused the Marfan patient of "faking it" because the heart condition was so well hidden behind what looked like an apparently healthy (albeit extremely tall) body. Your friend at Walmart was very brave to keep being out there in public despite his health limitations.

      Diabetes is another pervasive threat. I think this is the one where people are most sensitized to researching their family health history. My husband's family and my own father's family had diabetes issues, so we get the usual questions for every health evaluation for doctors' visits. How could we not check into the genealogy behind those answers?!

      I have a friend whose firstborn has hemophilia. There are others I've known about with other genetic health issues. These are some of the many reasons people should keep an eye on the genealogical trail of their health tendencies.

      Yes, I'm glad some of these difficulties are more treatable now than in past generations. Some still await their hopeful medical breakthroughs. Some don't even want to know, because they feel it puts them in a box or jinxes their future well-being. But I think it is information that could be put to good use to maximize our outcome, no matter what our health situation may be now, or in the future.

      Heather, if you can't tell (since I'm so passionate about this topic), you've motivated me to continue this discussion with a blog post today (Wednesday, January 9). I hope it encourages many others to research the health angle as they work on their family history stories.

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  7. Jacqui, I am so moved by Greg's story and the subsequent stories of Earle and Sam. They must have been very hard for you to write, and yet you have told them so tenderly. It is a gift to your family - and others - to be able to discuss so frankly this condition and its devastating effects on the entire family.

    I think this is a good example of how important it is for us, as family historians, to document our health history. We can learn so much from this and even help our future generations by being aware of health patterns and diseases. Thankfully, we live in an era in which we can discuss these things much more openly than in times past.

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    1. Good point about the health history, Linda. It is so much easier to do that sort of research now--something we all can do for those future generations we are thinking of, as you said.

      It was hard facing all the twists and turns in that family story, but with the distance of years, it has become easier to share. Plus, there has been the motivation of getting the word out about Marfan syndrome, as so many have never heard of it.

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